posted
This is a major problem for people who don't have a lot of money to pay for a doctor visit. Besides not accepting insurance, a major llmd office recently decided to end acceptance of old medicare patients. This is causing quite a problem already for patients being dropped.
What are Lyme/co patients to do who don't have big bucks, as in hundreds of dollars, to pay the doctors? We need some diagnosis and treatment solutions. We are sick and need to be treated for these infections.
The doctors who should be treating Lyme, the infectious disease doctors, are not, and therein lies a major problem. I think they are running from their responsibility to the public.
But it's more than infectious disease doctors. It seems like practically all doctors, in whatever field, are avoiding Lyme disease/coinfection diagnosis and treatment.
The opposite needs to happen. All doctor fields need to be aware of Lyme/coinfections and to treat them, as we show up in all their offices asking what is wrong. I went to so many specialties, and none of them figured out what I had for 25 years. I was caught online by a nurse from the East coast. I have been writing letters to many places that I went to to tell them about Lyme.
[ 22. December 2006, 03:03 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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mlkeen
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Member # 1260
posted
Our llmd has recently started expecting payment at time of service and will still submit paperwork to the insurances he accepts. The patients will then get paid back by the insurance companies.
Many companies were taking 120 days or more to pay him, he just couldn't do it.
Posts: 1572 | From Pa | Registered: Jun 2001
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lymie tony z
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Member # 5130
posted
Just speculation here but...
If any doctor takes insurance money then the insurance people seem to have some control as to what the doctor treats...
If that doctor does'nt treat within the insurance guidelines...they leave themselves open to fraud investigation...
If however the doctors take cash...they will be able to treat however they please..
The REAL trouble comes when people with NO PRESCRIPTION insurance or insurance that is not recognizing the diagnostic code for lyme disease thus limiting the amount and length of time we can get abx.
Eventually they WILL back us up into a corner and ACTION WILL have to be taken as a matter of life and death.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I think this is one of the problems that hurt LLMD's. They seem to want to work on the fringe. My DR charges $ 175 each time I go through the door. NO insurance accepted
Posts: 355 | From NY | Registered: Jan 2006
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Aniek
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posted
There are numerous reasons LLMDs don't take insurance. And remember, some do. I pay my $10 copay per visit.
One reason is that some insurance companies have dropped the doctors from their network. This happened with Dr. J after his hearing in NC. It sometimes happens even without a board hearing because the doctor is costing the insurance company too much.
Another reason is that it is suspected that insurance companies are often behind complaints to medical boards. So some LLMDS are weary of insurance networks.
The more alternative (meaning non-medicine) therapies a doctor uses, the less likely an insurance company will cover the therapies. It is very difficult for doctors who use lots of alternative methods to be in a network.
Remember it might not be the doctor's fault. Our system is wacky and screwed up.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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trails
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Member # 1620
posted
I will mention this again here. LLMDs are not the only doctors that must treat out-of-network.
Doctors that treat endometriosis are often out-of-network. The best treatment (most lasting relief--there is no cure) for endo is a surgery that is called excision. This surgery usually takes a minimum of 3 hours. It is NOT covered by insurances even though time and again the peer reviewed literature shows in long term follow-up studies that women get much more relief with these procedures than the ones covered by insurance.
The cauterization and ablation surgeries that ARE covered by insurance are only about 30 minutes in the OR but they are needed about every 18 months. They remain far cheaper for insurance to cover and who cares about repeated surgeries, scarring, and pain for the patient? Not the insurance. Whereas excision is typically only needed once or twice in a woman's lifetime.
So many endo excisionists also are not preferred providers. The insurance does not cover the procedures they perform.
It is the same with LLMDs. insurance does not cover the treatment they adhere to. The IDSA guidelines are not helping this situation. Posts: 1950 | From New Mexico | Registered: Sep 2001
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TerryK
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posted
LLMD's do not take insurance for the reasons already mentioned - especially that some insurance companies will not keep a doctor in their network if they treat contrary to insurance company dictates. This means that if the LLMD wants to remain in a contract with the insurance company, they may not be able to treat lyme and co's appropriately. If they bend to the will of the insurance company then of course they are no good to lyme patients.
The other thing that I've seen is that some doctors have to go bankrupt because they *had* a contract with the insurance company and then suddenly the insurance company refuses to pay for services already rendered that they have been paying for in the past. This leaves the doctor holding the bag. Horrible thing to happen to someone who is already putting their career on the line to treat us. Who would willingly take a chance that this would happen to them?? Most of us wouldn't if we were in their shoes.
If we want to keep our LLMD's, we have to understand that they have to do what they have to do in order to stay in business. Insurance is a big issue and I do believe that LLMD's are left with very little choice if they want to continue treating lyme patients appropriately. Of course, the few who were able to offer taking insurance now may eventually have to stop if we don't do something about the IDSA guidelines.
Some of you can get re-imbursement if you submit your own claims. Those on social security cannot. If your doctor opts out then you are not allowed to submit your claim for payment. If you see a doctor who accepts medicare, then the doctor's office by law has to bill for you. I'm spending my retirement money on treatment. I'm lucky that I can. I feel very bad for those that don't even have that option.
We can't blame LLMD's for the fact that they can't take insurance. In fact, we should be grateful that they are making the hard decisions so that they can stay in business, otherwise we have NO ONE to treat us.
We NEED to get the IDSA guidelines retracted or changed so that our situation with insurance companies can change. Those who can afford to get treated and are treated and better must then do whatever they can to help change the situation so others who can't afford treatment can get help.
I'm not a doctor, just my opinion.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
aniek, you are so LUCKY to be paying only 10% co-pay! rest of us is out of pocket although we have insurance that is not accepted.
$175 visit; that's reasonable! mine is $250/hr.; others i know of are: $400/hr. and
EDITED: THANKS TERRY FOR CATCHING MY MISTAKE IN READING! dr. j at $700 for 3 hrs.
w hen i talked to des moines, iowa's vp of bcbs, she told me insurance take 50% off the top of whatever drs. charge! it's automatic.
my llmd told me she refuses to accept that so OPTED OUT OF MEDICARE. she firmly she deserves the ENTIRE amount from patient.
ok, i can see the opting out of medicare, but for any llmd to decide that WE LYME PATIENTS CAN NOT FILE OUR BILLS WITH OUR INSURANCE CO., EXAMPLE BCBS, is wrong!
she told me, don't file your bills w/insurance companies; i made that decision for medicare and your private insurance company!
also, had i known that my 1st time there for the 600 charge for 3 hrs., i would have accepted her 20% OFF MEDICARE PATIENTS and gotten $120 OFF my 600 bill! disgusted!
TerryK
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posted
quote: dr. j at $700!! hr.
His website states that the first visit is $700, plan on a 3 hour visit. The next one is $350, plan on 3 hour visit. Not $700 an hour.
quote: ok, i can see the opting out of medicare, but for any llmd to decide that WE LYME PATIENTS CAN NOT FILE OUR BILLS WITH OUR INSURANCE CO., EXAMPLE BCBS, is wrong!
she told me, don't file your bills w/insurance companies; i made that decision for medicare and your private insurance company!
That seems wrong to me too! You are not allowed to bill medicare by medicare rules but you certainly should be allowed to bill BCBS!! Has she given you any real reason besides some autocratic response?
quote: also, had i known that my 1st time there for the 600 charge for 3 hrs., i would have accepted her 20% OFF MEDICARE PATIENTS and gotten $120
I don't know the whole story but perhaps she will give you credit for the 20% towards your next visit? Can't hurt to ask. If the office person say's no, talk to her yourself. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Aniek
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posted
Betty,
I don't see how a doctor can tell you not to file with your insurance company for reimbursement. That won't impact what she is paid, because you pay her and get reimbursed for part from insurance.
I'm wondering if she is worried about being reported to the medical board. But, quite honestly, I don't think it's ethical of her to use that to stop you from getting reimbursed.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote:Originally posted by lymie tony z: If any doctor takes insurance money then the insurance people seem to have some control as to what the doctor treats...
If that doctor does'nt treat within the insurance guidelines...they leave themselves open to fraud investigation...
If however the doctors take cash...they will be able to treat however they please..
That's it in a nutshell.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trueblue
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Member # 7348
posted
quote:Originally posted by cave76: If you have MediCare Parts A and B then there's another, more lengthy, process to go through before you send MediCare's denial or portion of payment to your secondary.
But it can be done. I've done it.
Just wanted to go back to this for a moment. I have Medicare Parts A and B. I have no secondary insurance as I am not eligible for a medigap policy until I turn 65.
Anyhoo, I had labs done By ImmunoSciences. I called them first and they said they do not accept Medicare and I could pay them and then file for reimbursement. This was a blatant lie.
They neglected to tell me they haven't been Medicare provicers since 1994. They made it sound as if they just didn't take assignment.
If a provider is not a Medicare provider Medicare will not pay them or you period. What Medicade will do, and I believe this is what Cave is referring to, is...
allow you to file so they can provide a denial and then you can submit it to your secondary and see if they pay some or all of it.
It was my ignorance that I did not know this prior or I would not had this testing done. I had never had someone tell me I could file on my own and get reimbursed. Never thought to double check; my bad for trusting them. I'm out $250 and for anyone else in this situation I would find another lab that is more ethical to do business with.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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TerryK
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posted
quote: If you have MediCare Parts A and B then there's another, more lengthy, process to go through before you send MediCare's denial or portion of payment to your secondary.
But it can be done. I've done it.
I've been told repeatedly by medicare staff that I CANNOT file a claim period. It MUST be filed by the doctor's office, period. Maybe the law has changed since I was told this because that was a number of years ago?
I'm far from 65 and I have medigap.
I've talked to my medigap policy provider BCBS twice about whether they will pay anything towards a bill from a doctor that has opted out of medicare and they have said both times, absolutely not.
I have no idea how to send a medicare claim to medicare because they told me they will not accept a claim. Can anyone tell me how to do it? Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
quote:Originally posted by Aniek: Betty,
I don't see how a doctor can tell you not to file with your insurance company for reimbursement. That won't impact what she is paid, because you pay her and get reimbursed for part from insurance.
I'm wondering if she is worried about being reported to the medical board. But, quite honestly, I don't think it's ethical of her to use that to stop you from getting reimbursed.
terry and aniek, she even stated that in her typed medical notes; not to file w/bcbs. no, she did not give me a good reason.
IF IT'S FILED W/MEDICARE, SHE COULD LOSE HER LICENSE.
medicare refused to give me a denial letter as well.
so i used the OPTED OUT FORM SHE REQUIRED ME TO SIGN prior to treatment; just wished i'd gotten a copy of her signing it too!
still waiting to hear about my bcbs complaint i filed with iowa insurance co.
terry, good idea about the $120 deduction from next visit, but she is firm.
wouldn't take back some UNOPENED supplementalpills she sold me that were 2 months old!
they have us over a rock and a hard place! talked earlier tonight to our newest hawaii member who will have to fly over here to calif. for treatment.
he did some calling today and was quoted from $200 to $450/hr. and wanted to know what to expect; NO CONSISTENCY among them all.
plus he'll have the expense to fly over here too so wants the best for the most affordable rate!
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posted
Thx for responding, everyone. I am thinking about your responses. Obviously, there are difficulties on both sides -- the patients and the doctors.
I called Nancy Pelosi's office today to discuss the situation. She is my rep. They were very nice there. Her aides said she is very aware of Medicare's problems. She will be working on Part D Rx issues immediately.
I discussed how many Lyme/co patients are having a hard time finding a doctor if we don't have much money. The staff said Pelosi is well aware of insurance problems, but they said it is also ok if we want to write a letter to our own representatives with our story, so they will have it on record as an example of a problem their constituents are having.
I say the more letters on an issue, the better. We can state what the problem is for us. We don't have to know or have all the answers. Maybe those answers can be worked out, as in who is going to diagnose and treat the flood of Lyme/co patients?
So I plan to write Pelosi, Boxer and Feinstein letters about what is happening to Lyme patients here, who cannot find a doctor who will see them with their insurance. I also plan to call the DC offices and talk with aides. This is a life-and-death issue and we need to speak up.
Question: Has any public health dept anywhere ever gotten involved? They have helped with AIDS testing and treatment. Ideally, I wish public health depts would test us(via a good lab with good testing) and treat us for free, with public funding. This is a public health plague.
Posts: 13116 | From San Francisco | Registered: May 2006
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TerryK
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posted
Good idea's Robin123. Our State group leader had a meeting with State officials who will try to help those in our State who have medical and disability insurance issues due to lyme. Doesn't apply to Medicare but she has done a great job of getting someone from the Governor's office on board to help.
quote: IF IT'S FILED W/MEDICARE, SHE COULD LOSE HER LICENSE.
If she's opted out of medicare then she cannot get into trouble even if you try to file a medicare claim (which according to medicare is not allowed anyway). That's the whole point of a physician opting out. It allows them to treat medicare patients without being governed by medicare rules and regulations. If a physician does not opt out, they are legally required to file a claim for any medicare patient that they treat. Claims are never filed by patients, only by providers. It's been that way for years.
According to research I did on this awhile back, a provider can opt out of medicare and yet still keep a provider number. If they keep the number, lab tests that they order *might* be paid for. If they don't keep a number, lab tests supposedly will not be paid for. I don't know how accurate that is but that is what I read and that is what I was told by a medicare representative.
quote: still waiting to hear about my bcbs complaint i filed with iowa insurance co.
If your bcbs insurance is medigap coverage, it is unlikely that you will recover any money if your doctor has opted out of medicare since my understanding is that medigap does not pay anything for doctors who have opted out of medicare. I *think* medigap policies are fairly standard but it could depend on which coverage letter your policy falls under. You know, A,B,C etc.. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Michelle M
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posted
quote:Originally posted by cave76:
The Public Health Lab here (Sonoma County CA) definitely follows party lines. Nice people but party-people.
I got that impression. They run the only test around for babesia WA-1 and in fact, that's where IGeneX sends its samples.
For a while this past year, they actually artificially raised the titer level up higher than the standard required to register a positive test -- must've been giving California a bad name to have so many positives coming up. I think a lot of people raised holy he11 and they fortunately returned the titer cutoff to where it originally was.
I'd still love to know what THAT was all about.
"We don't have lyme around here" and Sonoma County property values might figure into it.
Politics, and not health, as usual.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trails
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posted
You can attend the LDAC lyme disease advisory comittee meeting in sacramento. It should take place in feb-march sometime. The DHS and the vector born disease arm of it both are present, as well as doc S from san fran, doc lane from UC berkeley and CALDA reps and the public. I havent yet figgered out exactly who's fingers are in who's pies here, but I know that we need to put pressure on the public deptartments.
look at the calda website for more info and follow the discussion group there to find out the date of the meeting. many people car pool. they accept public input at the end of the day.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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bettyg
Unregistered
posted
quote: by TerryK:
quote: still waiting to hear about my bcbs complaint i filed with iowa insurance co.
If your bcbs insurance is medigap coverage, it is unlikely that you will recover any money if your doctor has opted out of medicare since my understanding is that medigap does not pay anything for doctors who have opted out of medicare. I *think* medigap policies are fairly standard but it could depend on which coverage letter your policy falls under. You know, A,B,C etc.. Terry
terry, we're NOT on medigap; it's the state employee retiree plan; better than medicare offers!
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Aniek
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posted
Betty,
It sounds like the only thing preventing you from filing with your private insurance is your doctor telling you not to.
It still seems unethical for a doctor to tell you not to file a claim for reiumbursement with a private insurer. But I'm assuming it's because she is scared BCBS will come after her for the treatment. And I'm not sure the legal status of you signing something saying you won't file.
Maybe you can talk to her about it? Try to find out why? Or consider finding another LLMD so you can file for reimbursement.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Trails: if the LDAC meeting in Sacramento in February or March is open for public participation, then let's organize to go. I have a lot of questions and I would like some answers. Rally time for California? To have the public health dept step up to the plate and do something regarding education, diagnosis, treatment? What are we dealing with here?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Also, I want to reiterate what Pelosi's office said. We can write our own reps -- both House reps and senators -- and tell them our Lyme/co stories and our needs. We will be on record that way.
The public needs accessible diagnosis and treatment -- meaning healthcare coverage as well. A lot of us cannot afford to pay hundreds of dollars to be seen for medical care. We need health insurance coverage for this plague disease!!!
We need the Congressional Lyme funding bills passed for education and research. I understand they will be reintroduced in the next Congress. And whatever else you want to tell them. The more letters, the better.
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
quote:Originally posted by Aniek: Betty,
It sounds like the only thing preventing you from filing with your private insurance is your doctor telling you not to.
It still seems unethical for a doctor to tell you not to file a claim for reiumbursement with a private insurer. But I'm assuming it's because she is scared BCBS will come after her for the treatment. And I'm not sure the legal status of you signing something saying you won't file.
Maybe you can talk to her about it? Try to find out why? Or consider finding another LLMD so you can file for reimbursement.
aniek/others, I DID FILE $4300 out of pocket expenses w/bcbs mostly in may 06. they've given me nothing but the run around. i documented well EVERY PHONE CALL TYPING AS THEY TALKED.
8-06, i involved 1 of their VP of company. she promised to get the DENIAL LETTERS TO ME; 3 months still had nothing so meanwhile i was gathering together my medical reports/evidence why tests, etc. were needed plus going out of state since IOWA HAS NO FT CHRONIC LLMD!
so i filed regardless what she told me from the very beginning, and she was NOT happy about that at all! like i said earlier, had i known all of this, i'd just have taken the 20% medicare OFF MY $600 BILL!
yes, i'm contemplating going out of state again to another GOOD LLMD! i'm not happy on many things how they were handled, but thankful she did do complete body lab testings finding many other things wrong including the food/MOLD allergies, etc! so it wasn't a wasted trip!
supplements were wasted in my opinion!
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geniveve
Unregistered
posted
i am in total support of all of you. my insurance sent me a letter saying they were referring me to a chronic disease department, whatever that is. somebody told me it was a red flag that i was costing them money and a marker to monitor my expenses.
but while i support all the wonderful, caring llmd's who go out on a limb, let's remember there are some real losers out there. and they are so-called llmd's too. don't tell me different, cause i went to one. he charged my insurance almost 5,000, yep 5 grand, for 7 visits. he tried to put me on thyroid when there was nothing wrong with it plus that he was abusive. i understand there are lawsuits against him, don't know how many.
this guy is taking advantage. but on the other hand, i understand some people think he is god-like. but get this, they are men...go where you want with that one.
some women continue to go but have told me they are afraid of leaving him because they won't get treatment.
how many lyme patients have to feel this way because of doctors? not all, of course.
it's frustrating. in a state the size of texas that you can't get good care.
also i worked over 30 years and now bc/bs is giving me holy hell because of treatment. my copayment is 15 and that's pretty good.
i have another prescription for 3 more months of ceftin from my infec doc. she's kept me on meds since january of 06 and is trying her very best. so for me i'm sticking with her. we'll learn together. that and getting my meds from the military help, so i can't complain.
but heaven help us, because the docs and insurance companies won't.
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Vermont_Lymie
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Member # 9780
posted
Well said Robin. The high cost of llmds that do not take insurance is depleting all of my funds, but like many of us, what choice do I have? Thank you for writing letters and pursuing lyme education for all. When I am able to, I will do the same. ella.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Thx, Cave -- I think it would still be ok to organize something around that meeting.
By the way, the cover of that state brochure showing almost all counties impacted is very effective. I simply show it, along with the cover of another brochure with the pics of the ticks on someone's finger, and voila, the point is made immedicately about ticks-on-us-in-California!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Yes, I am having a cow as I research the LLMDs and what they charge. I am new to all of this so don't want to make snap judgements. I'll hold my tongue for now.
However, I am totally shocked at what they charge. Afraid like others that I just won't be able to afford correct treatment even though I do have medical insurance.
I will definitely be writing about my experiences to the politicians of this state requesting that some positive actions be taken.
Thanks!!
Posts: 13 | From Hawaii | Registered: Dec 2006
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posted
That's a silly statement for Hawaii health dept to make -- birds, people, animals land there all the time...
Never heard of bedbugs carrying/passing Lyme/co's. Any info on this?
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
doug, glad you found this posting!
do any of you remember the female hawaii's name on this board; she posts infrequently. i was hoping we could hook the 2 of them up for PMs so doug could find out where she is getting chronic lyme treatment!
cave. thank you so much for doing what you do best: complete addresses and references on subject links to help us all! way to go cave!
merry christmas to all, and to all a good NIGHT SLEEPING; rare to us we know!
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posted
I called all over the bay area yesterday and so far didn't find one llmd who takes insurance. Is this the way it is across the country? What do patients do who don't have extra bucks? I'm already covering for weekly medical expenses.
What other kind of a doctor will do meds with us? I already checked in with an ID, a rheum, and a pain clinic. No, no and no. The last one said: We don't treat the disease -- we treat the symptoms. I told her the abx treat the symptoms. Twilight zone here.
Do people generally end up with a sympathetic GP who will try meds with them? Maybe GPs need to get educated and help their patients. They take my insurances.
Posts: 13116 | From San Francisco | Registered: May 2006
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TerryK
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Member # 8552
posted
I think it is rare for an LLMD to take insurance due to the many reasons that have already been listed in this thread. Most people pay out of pocket and then file a claim with their insurance company. As already noted here, those of us with medicare do not have that option and if the doctor does not take medicare, we must pay out of pocket and get no reimbursement from medicare.
quote: What other kind of a doctor will do meds with us?
I think ID's are the least likely simply due to the fact that the IDSA does not approve. I don't think there is any particular specialty that is more likely than others but perhaps someone else may come along with more info. I think a doctor that you have a good relationship with and who is open minded *might* consider treating if they are not afraid to get into trouble.
quote: Do people generally end up with a sympathetic GP who will try meds with them? Maybe GPs need to get educated and help their patients. They take my insurances.
If you are lucky. I think it depends on the State that you are in. M.D.'s in my State are afraid to give abx for lyme. We had a doctor who worked for Kaiser, who had lyme himself and thus learned what needed to be done to treat it. Years ago he was up on charges with the medical board (thank you Kaiser) and despite many patients coming forward to say they were better after his treatment, he was told to either stop treating lyme or lose his license. That put a chilling effect on M.D.'s who might have consider treating before that.
OTOH, Naturopathic Doctor's in my State can prescribe abx because they are not under the same scrutiny as M.D.'s in terms of the medical board. They have their own medical authority. They are not covered under most insurance policies unless you have the type of policy that covers alternative practioners. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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Member # 8552
posted
quote: [note to anyone who wants to refute my heretical statement above might want to start their own thread.
I wouldn't think it is necessary to start a new thread unless a person wants to hijack the purpose of the current thread. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
California doctors who treat Lyme are protected from medical board investigations under the legislation protecting alternative treatment modalities. Therefore, doctors may be less scared in CA right now.
Some people do have GP's work with an LLMD, usually when the LLMD is out of state. The GP is seen more regularly and gets education from the LLMD.
It's a complicated illness. I would not want to put my health in the hands of somebody who didn't know what they were doing. A good LLMD knows how to change treatment according to your response.
If you end up trying to get reimbursed, I'd check to make sure the LLMD is an MD and not a naturopathic doctor. It could impactwhat the insurance company reiumburses.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thx, all, for responding. So, in reading the last several posts here, the problems lie with the medical boards and the HMOs? And other insurance companies too.
Still, the problem remains that people are not getting accessible treatment for an infectious disease. People would laugh if such were the case for other ones, like TB or syphilis -- no one with those infectious diseases has to jump through hoops in order to get treated.
So I think the problems still need to be put out there: patients not getting accessible care for their disease and doctors getting hounded.
Congress should hear more about this. I still would like to call Washington DC in January and start talking with representatives about the seriousness of people so ill like this not being able to get treatment. Maybe the more calls and letters, the better. Then they'll realize the public cares about this issue and wants some work done on it.
Of course, there's also the issue of the two Congressional Lyme bills that will get re-introduced. But I don't think they will do anything about us getting healthcare for being sick. I'm going to make some noise about this. Maybe I'll call the nation's major newspapers and magazines too. I just think it's totally wrong for sick people not to get healthcare!!!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Hi Cave -- I am fully appreciative of all the hard work everyone has done! Since I am new in awareness of Lyme(but not new in terms of having had it for 25 years and how it completely turned my life upside down), I guess it's on my front burner to communicate as much as I can about it.
And I am, constantly. Posting bulletin board info, handing out wallet-sized slips with websites, contacting medical places, etc.
Amazing that we should even have to do any of this. This is as serious as AIDS, which everyone is aware of. Here I was, doing my best to protect myself against AIDS ever since it was reported, not knowing I was harboring another infectious disease. Very ironic.
I am incensed that I had to go 25 years without being told by one person here what this was. And I'm not the only one. I'm hearing that this is a common story. I have already caught some people here who had no clue what they have. Ridiculous.
This must be politics. No one in their right mind would allow this to happen to people and animals and to our world.
When I call the Congressional reps in January, I'm going to ask them what they plan to do about this problem. If we all call/write our reps, then they'll be hearing from us that this is something we want this new Congress to be working on -- ie, the bills, and any and all issues we want to bring up with them. For me, this issue of lack of affordable doctors for the public to see. The public has got to be seen. Who's going to do it?
Where's that little steampot icon? That's how I feel!
[ 29. December 2006, 05:03 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
It's the same with me. I've seen 2 LLMDs. One in-state and one out of state. Neither one take my insurance (Medicaid) & I had to sign forms that state I have a contract solely with the Dr. I don't know why? I used to have an excellent high risk policy through the state. It cost me a lot of money, but it paid well. HOWEVER, it did not pay for Lyme treatment. I come from a state that is a known Lyme Hot Spot. The governor even had a Lyme awareness month. Yet, this gov't policy will not pay for my Lyme treatment.
We've had to borrow money to see the drs. All of them are very, very expensive. But, they are getting to the bottom of my health problems. Now, I know I have Lyme, Babesia, Erlichia, Mycoplasma, EBV, CMV. Knowing what we have is one part of the puzzle.
Treating it is difficult. Paying for treatment is impossible without going bankrupt. Now, the bankruptcy laws have changed to protect the bankers, etc... It is a bad law. Our Founding Fathers realized there were times in people's lives when it was necessary to be able to start with a clean slate. Now that has been taken away from us except in rare cases.
My LLMD says it will cost about $25,000 to treat me. It looks like we will lose our house. But, we have to live somewhere.
So, we have to get changes to happen from the state, the CDC, the NIH or else we are just spinning our wheels. It's not fair, but this is how it is.
Wow! guess that was a long vent. I didn't intend to vent when I started this post. Insurance companies make me sick!!!!!
Kayda
[ 01. January 2007, 02:49 AM: Message edited by: Kayda ]
Posts: 582 | From midwest | Registered: Nov 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo ho...
It's WONDERFUL you want to change the world.. at least the Lyme world! That's how I got started too... about 20 years ago. That said...
May I suggest... Robin 123...
Rather than start from scratch trying to pave a new path through this insane jungle... why not join us on the road that is headed in the right direction and which has opened doors never before thought possible?
Many have gone before you and started at various levels trying to bring change. Much change has been made because of those efforts. That is true even considering the problem was "in the old days".. that we were so very sick back then (keep in mind there were NO LLMD's back then.. only lists of the "less evil" ducks that MAYBE we could strangle to get some antibiotics).
We were also few in number.. and scattered across the country.
Today we have computers.. long distance calls available.. and real doctors working to "fix" us as best they can. We also have a LOT of experience as to what works and what doesn't.
If you want to make change happen.. and I believe you can... might you want to join up with others so you are a "FORCE" rather than a single voice all alone in your quest?
We could sure use your help! And I will assure you the hours you spend helping all of us by working together will be worth gold compared to trying to start fresh on your own.
Once you take a look at what has been done.. what needs to be done.. and how to go about it.. I am sure you will be kept VERY busy offering to help as a team.
And one more point..
Since we are at a VERY important point in making progress... any moves by folks who aren't "with the program" could be potentially dangerous for the "movement". Things are at a fragile state right now. One wrong move.. even unintentionally.. could cause a lot of boulders to come crashing down the mountain... and could upset the whole situation for many.
Hope you decide to join others and put your efforts to good use. We could REALLY use your help!
posted
Thx for your comments, Tincup -- I hear you regarding all the work you've done to this point -- congrats -- I especially enjoyed reading about the NY rally organizing.
I don't wish to detract from the work being done.
Here is my concern, and maybe you can help me with it. A major llmd office stopped accepting old medicare patients recently. These patients are feeling bereft. I can't continue there myself due to them not taking insurance.
It is really hard to find a lyme-treating doctor who will accept Medicare, let alone accept insurance. People with means can pay to see a doctor. People who are sick and without big bucks cannot.
When I talk with the public about Lyme, and meet people who are sick/poor, they don't necessarily have hundreds of dollars for a medical appointment. What am I supposed to tell them? You are sick and you can't get diagnosed or treated?
This is a spreading plague. It is severely disabling, it is contagious, it is often fatal.
Any other infectious disease is being treated, I believe: AIDS, syphilis, other sexually contracted diseases, TB, you name it, the public health dept is advertising with posters on our bulletin boards: come see us. Clinics advertise: come see us. And they are sometimes free clinics.
If someone were to ask me how can we afford to diagnose and treat the public for Lyme/co-infections, I would say: how can we afford not to? We will be losing our world as we know it, and every living thing in it as well, except for I guess those Western fence lizards!
These concerns are the ones I called Nancy Pelosi's local office about. I was stresssing the incredible danger to the public about the way things are being conducted right now regarding this plague.
The staff person was sympathetic. They said: write. Put your story on record. Let our office know. Let all representatives hear people's stories.
That is a typical response, when constituents have issues. They write them down for their reps to have. If reps get a lot of communication on an issue, they know their constituents are pretty concerned.
My question to you is: what in the work you are doing is addressing public access to diagnosis and treatment? What in the Congressional bills to be reintroduced is addressing this need and concern?
I am also open to pm conversation with you.
Thx -- Robin
PS I just read a statement in an article sent out by Robynn Harris about the CT atty gen'l investigation: "Blumenthal, who once led an effort to secure mandatory coverage for the disease..."' -- do you know the history of this?
[ 31. December 2006, 04:20 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
robin, do you realize how lucky Californians are with 30-40 LLMDS??
Iowa and most of mid-west have ZERO!!! Within our 7 state area, we are lucky to have 4-5 total from 3 states!!?
ours do NOT take insurance. welcome to our mid-west llmd world now! another thing you can inform nancy peloshi's office about.
robin, i'm so happy you have been pursuing things on your end letting nancy know about our LYME world of unending $$$ expenses! thank you my friend.
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NO LLMD's left in the state of TN nor any surrounding states. There may be one left 8-10 hours away but I hear he's being scrutinized and
it's just a matter of time before the insurance companies and medical board get him to run.
Welcome to Lyme care in the good ole US of A. Anything you can do to change this would be greatly appreciated.
Happy New Year
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Ok -- my new year's resolution for this hour:
I'll let Pelosi's office know about the lack of llmds in Iowa and surrounding states, as well as Tennessee and surrounding states.
You know, if I just name enough states with surrounding states, that might just cover most of the country...
Dear Madame Speaker: most states with surrounding states do not have enough llmds and CERTAINLY not enough that take insurance. Would like to hear back from you about this problem...
Remember that guy who wrote funny letters to politicians and then published them? Who was that?
Posts: 13116 | From San Francisco | Registered: May 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Robin,
Ditto the above!
Thanks for your activism and momentum...
I think TNJanet said it nicely, anything you can do to change our world our world is great!
And communication with folks like Pelosi are key. We need lots of voices out there telling this story.
And of course collaborate with the existing lyme groups too.
happy news years eve. Posts: 2557 | From home | Registered: Aug 2006
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
quote:Originally posted by bettyg: robin, do you realize how lucky Californians are with 30-40 LLMDS??
Betty, would you be so kind as to send me the list of 30-40 CA LLMDs. Because they are looking pretty thin on the ground out here, and if you know something I don't, I want to know, too.
posted
I'm able to answer my own question regarding the guy who wrote the funny inquiry letters to politicians. My remaining two neurons have just untangled themselves sufficiently to offer up the name of comedian Guido Sarducci.
Now Guido Tick Sarducci writes the following letter(plus he also invites any others to write an equivalent letter to a politician of their choice regarding remedies for Lyme)
Dear politician:
I am writing to you to respectfully request that you work to cancel all current funding for infectious diseases. This would include TB, AIDS, syphilis, West Nile, you know the list.
Reason being that the millions of us with Lyme disease and the millions of us yet to get it are not benefiting from any funding for it by federal and state entities. We don't think it's fair that some infectious diseases get funded and not ours. We are feeling a tad jealous.
Am eagerly awaiting your reply on behalf of equity for all infectious diseases.
In all fairness,
EFAID (Equity For All Infectious Diseases)
Posts: 13116 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
quote:Originally posted by riversinger:
Betty, would you be so kind as to send me the list of 30-40 CA LLMDs. Because they are looking pretty thin on the ground out here, and if you know something I don't, I want to know, too. [/QUOTE]
hi river, i'll pm you my LLMD calif. list! BG
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I noticed Arizona is not on that list. For some reason, I thought we did not have a LLMD in AZ.
RE: CA
When I first was dx in 2003, I contacted the LDA. I had a referral of 3 docs. Two had waiting list of over 1,000 people.
The 3rd was just opening an office. Last year I heard he had over 800 patients now.
One of them went bankrupt and was out of practice for a few years. I hear she is back in practice now.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bettyg
Unregistered
posted
KAM, i consulted both lists i have:
1 showed 1 dr. there;
other showed 1 LLMD; and 1 PAIN DR. not LL!
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posted
If there is a LLMD in TN, with proven track record and no insurance companies dropping him/her, I would surely like to know.
Also, I think that while there is the LLMD in NC, he must adhere to LDSA guidelines unless that has changed in the last two weeks.
There was a LLMD near me who was treating Lyme by referral from other patients and doing it rather quietly. Now BC/BS has pulled out on him and so
he no longer treats Lyme. I have been told of one LLMD in MO by a number of people. But a support group leader says he is now being scrutinized and will not be taking any new
patients. If I had the brain power and could talk coherently on the phone, I would gladly take any list and make phone calls to update any LLMD
still taking patients and willing and able to prescribe ABX. Anyone up to the task of doing that? Betty, would that help you with keeping
your list up to date and the information as to #'s of LLMD's actually still providing care to Lymies? The updated list would be the information
that our elected officials could really use. Also, when I wrote to my US Congressman a few months ago, I got a response saying that Lyme was
not problematic in TN. The letter was obviously written by an aide and also stated that in 2005 there were only 8 reported cases of Lyme to the
CDC from TN. I wrote a reply explaining that doctors weren't required to report Lyme cases to the CDC here. The next letter I received said
that since Congress would be gone in two days for the "holiday" break, there would be nothing he could do. SO, I intend to write again. But it
would really help if I had up to date numbers of LLMD's willing and ABLE to treat us. I'm sure this continues to be a fluid situation with more
and more docs being threatened and actually punished for treating Lyme using their own discretion and protocols.
By the way, Betty........don't know HOW you do as much as you do. EVERYTHING is so very much appreciated! You deserve hugs from each and every one of us!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Thx, Betty, for the list. Amazing situstion.
TNJanet, when you write again, you might remind them that the governor had Lyme this past summer and was given the gold standard -- immediate IV treatment.
Hm...what about contacting the contacting the governor's office about the whole issue? He's now had some personal experience.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin, TN's Governor went to the Mayo Clinic! His office received MANY phone calls, letters and emails pleading with him to see a LLMD. They were
all met with denial as far as I know. My own LLMD wanted to talk to him and I made his office the offer but they never responded.
I didn't know about him receiving IV ABX. After the initial reporting of his situation, his office was pretty much mum on the subject. It was
such a good opportunity to spread the word about Lyme but for some reason his office and staff were not forthcoming about his treatment or his
current health. I hope for his sake that he did get IV ABX. He certainly was very ill and his SX came on very quickly. He has stayed out of our
local news lately. I am paying attention to that situation. If you know something I haven't mentioned here, please PM me. Ya know, his spokespeople never actually said he had Lyme
disease. It was reported that he possibly had some type of tick-borne illness. This was a few months before elections and there was a very tight
Senate race here. His party won but I don't remember him doing any public appearances. I do remember a report saying he had lost about 15 lbs.
Guess I will call his office again and ask where he received TX since there we sure need LLMD's in TN and not all people have the luxury of going
somewhere else, especially since he has bankrupted the state's health care system for the uninsurable and needy.
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Thanks so much for your information and suggestions. I will definitely use that tactic when I contact the governor's office again.
It sure is hard to know where to put limited energy.....work on getting treatment, buy groceries, pay bills online, contact govt.
officials about Lyme and the need for DX and TX options. When someone (like yourself) offers advice I am always so grateful. It's as if
putting your brain cells to work on MY situation increases MY brain cells or maybe it's just me borrowing some from you. Did that make sense at
ALL????
Think I'm going to contact Nashville support group and see if they have the latest poop (I mean scoop) on hizz honor. My daughter has their
contact info. So good to hear from you!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
TNJanet -- I think it was one of the news delivery sites that mentioned Tennessee's gov getting IV treatment right way. Either [email protected] or [email protected]. Too bad they didn't use it as an opportunity to educate.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Yeah, I had gotten 3 docs name from the ILADS who are located in North Carolina, and one is in South Carolina.
2 have websites. One doesn't mention treating lyme on his site, he just mentions a bunch of symptoms like chronic fatigue, joint pain, etc. He is an Integrative physician. He does both conventional treatment and alternative. He also has stuff about metal toxicity, nutritional support, etc.
Though, I would be afraid of seeing him for lyme since his practice is diluted with lots of things.
And the other one does mention treating lyme on his site. That is the main thing. Though, he doesn't accept insurance, and his first appointment is $700. It does get cheaper for follow up visits. And he goes by the CDC diagnosis. And keeps mentioning about getting repeated testing. So, I don't think I would want to see him as I would probably see him several times and treatment may never even get started. Reason is because I test negative for lyme via ELISA and Western Blot. But I did test positive for it via C6 Peptide, and I don't think that test is accepted by the CDC yet. So, I would probably spend all that money for nothing.
Any opinions on Dr. M in Missouri? He used to work with Dr. C. I would like to see Dr. C, but plane tickets right now are over $500, and his first appointment fee is almost $500. I was thinking of seeing Dr. M since I could drive there in 5.5 hours and he accepts insurance.
So, is Dr. M good to see for lyme and coinfections?
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